Photographer Julie Willson debuted her portrait series of children with Down syndrome earlier this fall. The project was inspired by her late sister Dina, who had Down syndrome.

After an incredible response to the portraits, Willson invited all 11 families to come to Fusion Church in New Jersey this past weekend to share their stories in a video documentary. In honor of what would have been Dina’s 40th birthday on Thursday, Willson shared a clip from the documentary, “There’s Nothing Down About Down Syndrome.”

“Down syndrome is sadly looked at as a negative thing but after watching this video, you will see how wonderful it can be,” Willson wrote alongside the clip on YouTube. “I grew up with a sister who had Down syndrome and she was the absolute light of our family. My hope is that I can help make a change and to help you all realize that ‘there’s nothing down about Down syndrome.’”

Willson asked the families what advice they’d give to other new parents of children with Down syndrome, and she also asked them to share their emotions before and after they welcomed their babies.

“There’s nobody to tell you that it’s an amazing journey,” one mother explained between tears. “That she’s going to bring smiles to your life every single day, nobody tells you that. They tell you she’s not going to walk in a year, they tell you that she’s not going to talk in a year.”

“You have no concept of how your life is going to be blessed beyond measure by your child,” another parent added. “And I know you’re not ready to hear it now, but in the days to come you will see. There’s nothing in the world that could equate to the love that they’re going to bring into your lives.”

Willson told The Mighty she hopes discussions like these will raise awareness for Down syndrome and encourage society to embrace children with extra chromosomes.

“I think it’s going help a lot of parents cope with the news of their child’s diagnosis,” Willson told The Mighty. “My plan is to send this video out to doctor offices and hospitals nationwide so that when a parent receives their child’s Down syndrome diagnosis, they can watch this and know that everything is going to be okay.”

Willson told The Mighty that the film is slated for release on March 21, 2016 in honor of World Down Syndrome Day.

For more of Julie Willson’s photography, be sure to visit her Facebook page.

RELATED VIDEOS


I hate that my son, Rukai, has Down syndrome. With every fiber of my being, I hate it.

There. I said it.

But it’s not why you may think.

In fact his condition, delays in development and challenges are in no way the reason. Because, quite simply, they are not the problem.

I hate that before Rukai was even born, he was labeled. They started straight off with me, anointing me with “high-risk” and “of advanced maternal age.” Our nightmare pregnancy journey then moved to a virtual forest full of paper in the mail telling me where to go and what tests to take, which cold white rooms to wait in. I was patronized and chided and frightened and later assigned “gestational diabetic.” I was a wreck. That “pregnancy glow” was little more than the light reflecting off all my constant tears.

Old. Flawed. Faulty. We will watch you very closely. What about “Congratulations”? What about “First baby, you must be excited”? What about “How are your folks feeling about becoming grandparents?”

I hate that Rukai has Down syndrome because society has positioned disability in such a way that human beings can be so callously disregarded. Devalued.

Rukai hadn’t yet taken a solitary breath, yet he was plastered with “risk, one in 119.” He was “echogenic focus” and “anomalies” and “Here, read this leaflet, take this blood test, let us stick a needle in your belly to determine whether we will have to advise you to end your pregnancy.” There whispering sweet nothings and holding hands with that big old six syllable pointed needle gut invasion, was “risk of miscarriage present but not high enough to matter.”

Beg your pardon? No. Sorry, not sorry. Mattered then, matters now. So glad we declined your prodding. Here, jam this needle in your guts and tell me about it.

Where they saw nothing but flaw, we saw our much-wanted son, clouded by gargantuan fear we didn’t have before they started injecting our lives with it.

“I’m sorry I couldn’t give you better news,” said the sonographer.

Really? Well, I’m sorry you felt that “it could be something, it could be nothing” was so dreadful it needed an apology.

High-risk.

Of advanced maternal age.

Gestational diabetic.

Risk.

One in 119.

Echogenic focus.

Anomalies.

Wait 

Try mother and son.

Try it.

They couldn’t. They didn’t.

Rukai was our baby. Now he is our toddler. I have loved him the same since I saw those two blue lines on a plastic stick and bounded down the stairs to share the blissful news with my husband after years of trying to create him. There is no diminished hope or anticipation. There is no less love and joy than there was for the “typical” baby we had expected on the day. And damn it all, weren’t we fortunate to be steered on to a different road. The one that makes people stop and think of why anyone has any value in any life at all. The one that teaches us patience. And tolerance. The one that reminds us that we must now question everything.

I hate that total strangers take what is special about my son and ruin it with pity.

I hate that society has lessened his value before they even have a chance of knowing him.

I hate that swathes of “professionals” are perennially going to try and write his story for him.

I hate the assumptions. The closed minds. Hate all of it.

These all serve to ignite the fire called “my love” all the way to magma. That love which is fierce, protective, frantic sometimes.

But it remains love. Like any other love, this love is precisely the same. Unwaveringly the same.

When Rukai still lived in the safety of my womb, I couldn’t wait to be free of the intrusion of the naysayers. I envisioned carrying our new son as we strolled straight away from that hospital and left the blackness behind. I was so relieved when the day came for him to be “out here.” And then he was born to a world that tries to shame us for our pride. That has drained us emotionally every second since. From saying damn you, we are proud. Damn you, he is our son. Who are you to judge him in this or any life?

I think not.

Yet we live. We live despite them.

I hate that the day he was born we were subjected to pity and predictions and negativity from pillar to post. Because all we saw from the moment we set eyes on him was our son and his power. Hands in fists. Angry. So small, yet so fierce. I knew then I’d let no one underestimate him.

I hate that in this life I have to be a Tiger Mom, because although I’m extremely well-versed in the art of arguing, I really do genuinely despise conflict.

I hate that people feel sorry for us. If you want to pity me, pity the intrusion we are constantly subjected to. Pity the fact that our joyous birth experience was unceremoniously taken off us and chucked out with the lunch scraps and bloodied bandages. Pity the road our son has to walk with people forever thinking he can’t. Having to prove himself forever that I am. I can. I will.

I hate Rukai’s Down syndrome because too many people refuse to strip it away and see only Rukai.

You don’t know what you’re missing. You don’t know how amazing this child is. You don’t know how lucky we are. How bright this road is. How crystalline the view is before us.

Some people call this road “faith” or “religion.”

We just call it “life with Rukai.”

Follow this journey on Down in Front, Please.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


Kohl’s is the newest major retailer to push for inclusion.

Beth Wisniewski, from Milwaukee, Wisconsin, submitted a photo of her son Henry, who is 3 and has Down syndrome, to a contact at Kohl’s over the summer. On Wednesday, she looked in the newspaper and saw Henry’s face.

unnamed-1
Courtesy of Beth Wisniewski

The image for the ad, taken in September at a photo shoot in Milwaukee, shows a smiling Henry in a pair of holiday footie pajamas. People often stop Wisniewski when she’s in public with Henry to compliment her son and remark on his adorableness, she told The Mighty. His charm and outgoing personality make him a natural in front of the camera.

unnamed
Courtesy of Beth Wisniewski

“Henry is a ham, he loves getting his picture taken and he loves performing for people,” Wisniewski told The Mighty.

unnamed-6
Courtesy of Beth Wisniewski

Wisniewski says both the modeling agency and Kohl’s were fantastic when working with her son. The fact that Henry has Down syndrome was never once brought up and he wasn’t treated any differently because of it.

unnamed-5
Courtesy of Beth Wisniewski

Wisniewski and Kohl’s were connected through Changing the Face of Beauty, an organization of parents and activists dedicated to calling on advertisers to be more inclusive. Katie Driscoll, the co-founder of the organization, believes this to be the first time Kohl’s has used a person with a disability in its ads.

unnamed-2
Courtesy of Beth Wisniewski
“The addition of yet another retailer this holiday including models with disabilities makes us extremely hopeful for 2016,” Driscoll told The Mighty in an email. “Christmas is a time all eyes are on retailers and their messages. We’re proud that we have helped influence the industry to make sure one of the largest minorities in the world is included.”
unnamed-4
Courtesy of Beth Wisniewski

“I think pretty much every kid is really cute, but I think our kids with extra chromosomes have a little something extra that makes them glow and shine,” Wisniewski told The Mighty, “and we want to share this magical facet of Henry with the world.”

The Mighty reached out to Kohl’s for comment but has yet to hear back. 


Parents of children with Down syndrome definitely did something to cause their child’s condition, right? And Down syndrome is totally a lamentable thing that requires blame to be assigned… right?

Wrong and wrong. Down syndrome is a randomly occurring genetic disorder and there’s currently no known environmental factor or behavioral activity of the parents known to cause it, according to the National Institute of Health.

Yet, for some reason, many people find it necessary to offer unsolicited opinions on what causes Down syndrome. We asked parents of children with Down syndrome to share some of the most ridiculous “causes” they’ve been offered.

Here’s what they had to say: 

1. “Apparently I did drugs or drank alcohol while pregnant. I did not. And he’s perfect.” — Kasey Dyck

2. “‘Your body was just young and unhealthy.’” — Louise Chalmers-Wilson

3. “I was told that vaccinations caused my daughter to have Down syndrome. Not sure if they meant [my own vaccinations] as a child or what. But it gave me a good laugh!” — Brenda Hickson

4. “No, my level of education had nothing to do with my daughter having Down syndrome.” — Tommy Sorg

5. “It was suggested that perhaps I hadn’t consumed enough folic acid while I was pregnant.” — Pamela De Almeida

6. “Someone told my mom it was because she stood too close to the microwave while she was pregnant.” — Venessa Pumarejo Golding

 

7. “I was told I drank too much caffeine once and caused it. Yeah, OK.” — Susan Alyssa Fox

8. “It was mentioned that my dad (who spent years in the Vietnam war) may have been exposed to Agent Orange, the effects of which weren’t expressed until he had grandkids.” — Mara Danke

9. “My age!” — Elizabeth Hermosillo-Ervin

10. “Saw a video online saying mothers’ exposure to x-rays and fathers’ exposure to microwaves caused Down syndrome.” — Lauren Jason Quear

11. “My doctor told me the Down syndrome was from having sex with the wrong person (my husband), and if I were to choose another husband I could have normal children.” — Jamie Awtry McClintic

 

12. “I have a client [whose] grandmother told her mother that demons or something like that came and punished my client’s mother for having a child outside ‘normal birthing age.’” — Bailey Annan Sonday

13. “Taking the drugs the hospital gave me to prevent labor after losing the first twin. I’ve had so many people say, ‘Aren’t you worried all those drugs they gave you caused the ‘damage?’ It’s like people are out and out stupid. Hello, she wouldn’t have been alive if I hadn’t kept her in with the help of those drugs. Yeesh.” — Annie Allen

14. “‘Oh, you must have been partying a lot while you were pregnant.’ I was 21 when I got pregnant with him. I used to get upset. Now 11 years later I’ll laugh and tell them to read a book. He’s adorable and I love him for who he is.” — Myndie O’Hare 

15. “‘What’s wrong with is father?’ LOL, I said, ‘everything.’” — Joseph N. Nita

16. “I took a five-hour driving course and the instructor said drinking while pregnant can cause Down syndrome.” — Racheli Berman

17. “I was told it was a punishment by God because I’m an Atheist.” — Laurie Brott

18. “Although not personally directed at me, I’ve heard others told they must have had an abortion because children with Down syndrome are punishment from God for having one.” — Carrie Brodfuehrer Shaw

19. “I was asked if it was because of my high blood pressure during pregnancy. Really?” — Jody Mellin 

20. “I got this question while I was at Walmart shopping one day, from a middle-aged lady whose husband was looking at my baby girl as if she were an alien…’Is she that way because you got pregnant as a teenager? That’s what premarital sex will do to you.’ I was 19 and married.” — Joede Fleming

21. “Mold in my house.” — Beth Hardinger

22. “I had my son at age 22 and was told that my eggs were old…” — Linda Featherstone

*Some answers have been edited and shortened.


A new television show is putting people with Down syndrome front and center.

A&E Networks recently announced it will be airing “Born This Way,” a new six-episode documentary series this December about young adults with Down syndrome.

7t4a2292
Scene from the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

Each hour-long episode will feature seven people from Southern California as they pursue career goals and romantic relationships, form friendships, overcome obstacles and make their way in the world. The show will also allow the families of the individuals a voice as they weigh in on the joys and challenges their family members with Down syndrome face.

7t4a2492
Elena and Megan star in the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

“We are proud to be airing this important and extraordinary series and hope it will inspire meaningful conversations about people with differences,” Elaine Frontain Bryant, head of programming for A&E Network, said in a press release. “‘Born This Way’ is a show with honesty, humor and heart that celebrates and embraces diversity.”

7t4a2354
Scene from the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

Among those featured on the show is Steven, who works two jobs and knows the title and year of every Oscar-winning film; John, who’s pursuing a career in rap music; and Cristina, who works at a middle school and has a boyfriend of four years who she plans to marry, according to Disability Scoop.

7t4a2518
Rachel, Sean Cristina and Steven star in the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

The network partnered with nonprofit Best Buddies International and has committed to airing PSAs featuring Best Buddies program participants to help raise awareness and promote inclusion.

7t4a2375
Cristina and Megan star in the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.
7t4a2594
Elena, John and Cristina star in the new A&E Docu-Series “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

“Born This Way” will air on A&E Network starting Dec. 8 at 10 p.m. ET.


A study is being done on a one-drop blood test that could detect Alzheimer’s disease earlier in people with Down syndrome.

Doctors at the Barrow Neurological Institute in Phoenix are performing the test on people with Down syndrome because of their high risk of dementia, the Associated Press reported. The test is designed to detect genetic indicators of the beginning of memory loss in people with Down syndrome before they notice it themselves.

Alzheimer’s disease occurs three to five times more often among people with Down syndrome than the general population, according to Alzheimers.gov. People with Down syndrome are also more likely to develop Alzheimer’s disease at a younger age than adults who don’t have the condition.

Early detection of the disease could mean better preventative treatment for patients.

“We would love to be able to detect on a blood test if you’re going to get Alzheimer’s five, 10, 20 years from now,” Dr. Marwan Sabbagh, the study leader, told the AP. “Then we could apply a prevention strategy in advance of the onset of symptoms.”

It’s too early in the study to determine now whether the one-drop blood test will lead to earlier detection for the general population, not just people with Down syndrome.

h/t KSTAR News

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.